TW/CW: Eugenics, nazis, murder, autism parents (not the same as parents of Autistic children), cures, ableism.
For multiple reasons I’m concerned about modern eugenics and how enticing it seems to be to the group of people known in the Autistic Community as “autism parents.” I witnessed a disturbing amount of enthusiasm about genetic testing from the parents at that autism parent meeting I attended a while back. I’m not attributing any malice to them and do believe that most (maybe all) of them are well-meaning, although being well-meaning doesn’t always lead to doing helpful things.
To give some background first – one of the most alarming things that I have learned in the last year or so about eugenics and eugenicists is that they are, overwhelmingly, quite human and well meaning. Eugenics was extremely mainstream less than 100 years ago and many of the Nazi euthanasia and forced sterilization ideas and programs were based on ideas and programs from the USA.
Honestly, it makes sense that many of the eugenicists were well-meaning because if they couldn’t present eugenics in a positive light it probably never would’ve become so popular in the first place. It’s all about how the message is framed and it also helps immensely if those spreading the message firmly believe it’s true and that they’re doing good work that brings progress and benefits society (or at least their segment of society) as a whole.
Many of the eugenicists’ claims even specifically preyed on the concerns of vulnerable parents of vulnerable children (See this link and scroll down to Child ‘Euthanasia’ Program for more) and the killings were often presented as “merciful” through various propagandas. The difficulties and expense of caring for disabled children and adults were highlighted in very specific ways that made forced sterilization a fairly attractive-looking proposal in the USA, which easily then led to more murderous methods under the Nazi regime.
My point in the italicized paragraphs, aside from giving background historical information, is that we aren’t nearly as far from eugenics now as most of us seem to think we are. In many ways we are closer than ever to achieving an actually science-based, “rational” sort of eugenics as opposed to the pseudo-science of 100 years ago.
The thing is that now, just as then, eugenics is framed as a positive thing that helps society and is compassionate in function. I personally know women who were strongly pressured by their doctors to abort babies that tested positive for certain genetic conditions. I agree with the author of this post that this is modern day eugenics.
So on to what I witnessed at the parent meeting, which will be a brief section because I was too stunned to take very many notes during that portion of the meeting. One thing that I did get notes about is: if I applied for it, my state would pay for my child’s genetic testing to help find the genes associated with autism and the other parents at the meeting were just thrilled about some website that registers the results of those genetic tests.
Their very next meeting (which I chose to skip, not being fully recovered from the previous meeting yet) was to feature a geneticist to come and talk about the genes involved in autism and about the benefits of genetic testing and mapping out what “causes” autism. It was anticipated to be a very highly attended meeting. Part of me wishes I’d managed to attend while the other part is thankful I respected my limitations.
Then earlier this month, news came out about genetic modifications in a human embryo in the USA, which started up a great deal of discussion online about whether it’s ethical or not to modify human embryos. Predictably, most of the people who prize themselves upon their “rationality” and scientific thinking have come out in favor of the process. Many of them also happen to be abled parents of disabled children (I’m purposefully not putting links here).
When I think of the narrative of doom and gloom that surrounds autism and about my neurosiblings who are forced into behavior modification programs. When I think of Autistic children and other disabled children whose lives are devalued even as their murders by those who are supposed to care for them are dismissed as “understandable,” it’s not difficult for me to see where this could potentially lead.
An aside: I want to be very clear at this point: Self described “autism parents” (a very distinct subset of the group that is parents of Autistic children) are mostly well-meaning and love their children. They, like most parents, want what’s best for their children and want to help their children succeed in life, but they do not listen to Autistic people about how to support their children in life. Instead they’re more likely listen to modern-day eugenicists and snake oil salesmen who peddle “cures” that often result in harm to Autistic people.
Many Autistic people have been harmed by those in our lives who loved us the most and thought that they were doing the best thing for us. This is not giving parents a pass for doing harmful things, but recognizing that many truly do not realize the harm that they’re causing, which in many ways is even more dangerous than outright malice or intent to do harm.
Well-meaning autism parents, already awash in the fear propaganda of large organizations, are vulnerable to the suggestion that their future children, having a higher chance of being Autistic, would be better off either not born at all or edited to reduce the chance of them having another
tragedy Autistic child.
Moreover, the act of purposefully reducing our numbers in the future could even serve to further stigmatize and devalue those of us who are already alive. Why accommodate or support us in leading meaningful lives if we’re a shrinking minority instead of a fairly steady portion of the population?
It’s possible that I’m being alarmist, but based on my understanding of history and based on the enthusiastic response to genetic testing and the frenzied seeking of a “cure” for autism that still exists in the here and now, I don’t think I am being alarmist. I think that this is a situation where people will ignore it until it gets to be completely intolerable to the majority, which leaves those of us who aren’t in the majority in a very precarious position indeed.
History does so often repeat and go in cycles. I see very many similarities (not including anything about modern-day Nazis or the current rise in nationalism) between our time now and the previous time when eugenics rose to prominence in my country. Those similarities worry me.
I’m going to end with what Unicorn Steph says here (and I highly recommend that you read the entire thing because she brings up additional important points regarding the expense of the genetic testing and societal inequalities)-
It greatly concerns me that it appeared to be only disabled people who were objecting to eugenics on twitter this week, that our allies are nowhere to be found. Disabled people as a group are frequently ignored, talked over, and not listened to. We can raise all these concerns but in the end, without allies I fear that we will lose this battle. Our existence is threatened, but abled people turn away or worse, join the ranks of the eugenics proponents who would rather we were never born.
Eugenics is a fundamentally immoral idea. Any and all attempts to put it into practice, be they in the past, present or future, were/are/will be unethical and will lead to the death of many people who have a right to life. In my opinion, there is no justification for eugenics and I will oppose it in all forms until the day I die.
I’m echoing her disclaimer – please let me know if I’ve made any historical errors, I’ve tried to be as accurate as possible, but I’m human and sometimes miss things.
For further reading about the history of eugenics, please click here.